Last updated: Jan-16-2008
DISCLAIMER
I am a patient, not a doctor
This information is based upon my own experience
Any medical advice should be approved by your physician
60th anniversary to dropping the A-Bomb on Hiroshima and I have chest pain.
X-ray showed signs of pneumonia, and then CT showed nodules and accumulation of fluid in the right lung.
During the next year I went thru various tests like bronchoscopy and Pet Scan but nothing was found.
For more details click here.
Jul-26-2006, Wed.
Upper back pain, mostly when I lean or lie down on my back.
The worst is in my Lazy-Boy recliner.
Aug-14-2006, Mon.
Pain continues. Low grade fever.
I call nephrology and they tell me to go to ER.
ER. They take urine and blood cultures. EKG is okay. Chest X-ray doesn't show fluid accumulation. They send me home.
Aug-16-2006, Wed.
CT. The results will be available on Friday.
Aug-17-2006, Thu.
7:00 pm: A call from the pulmonary to come immediately. Dr Adawi is afraid that my lungs may collapse any moment.
I don't see the urgency, I assume that nothing will be done anyway that evening and plan on coming in the morning.
We go out for dinner and even dance samba and cha-cha.
Aug-18-2006, Fri.
9:00 am. Hospital. Unit F2. I ask for a private room and they don't have one. We wait.
11:00 am. I have a bed. It's cold and we cover the air condition with a blanket.
They give me a gown and I stay dressed with my jeans.
A male nurse is very helpful and friendly. He takes a ton of blood, testing, among other things, drugs. The Darvon I took the day before shows.
Dr. Sayyad is in charge. Dr. Adawi has the day off. Docs from infection disease come. Docs from pulmonary come. Dr. Eichenhorn, head of pulmonary, takes charge.
He decides that there is no reason to keep me there.
5:00 pm. They send me home.
Oddly enough, both back pain and fever have gone.
Aug-21-2006, Mon.
9:30 am. Bronchoscopy, Dr. Kvale.
This time I don't feel anything. They give me more morphine and a few events after the procedure are completely lost from my memory.
After this test I start coughing and in bed I hear my lungs whistling like a pipe organ.
Aug-25-2006, Fri.
10:00 am. Dr. Adawi.
She tells us it's a rare cancer. She is very sorry for us.
It is called Spindle cell carcinoma. About 0.1% of all lung cancers.
She knows very little. Says it progresses slowly.
We'll be called on Monday to schedule an appointment with an oncologist.
It takes time to digest the news, but we know that we are going to fight it.
Where did it come from? I've never smoked, no drugs, hardly drink alcohol. It could only be the immunosuppression drugs.
First thing to do is searching the internet, but there's very little info about this type of cancer.
Not long ago I thought that I'd beat the average life span in the US and all of a sudden I realize that the end is much closer.
I must admit that thinking about my own demise is strange and emotional.
I am not afraid of death, but I am not ready to go yet. There are a lot of things I still want to do.
I am not ready to leave my family. My wife is my best friend and leaving her is kind of betrayal.
I have two daughters and a son. One of my daughter is expecting, bearing my first grandchild. Will I see him?
My son is going to law school in NY. Will I be here when he finishes?
Aug-26-2006, Sat.
The weekend seems endless. Fortunately we are busy packing for our son's trip to NY.
At 4am on Sunday dawn we are all in the car ready to go to the airport. From now on the nest will be empty.
Aug-28-2006, Mon.
10:00 am and nobody has called. We call. Talk to Joan Evans, nurse coordinator.
Appointment is scheduled for Wed. 4:00 pm.
Aug-30-2006, wed.
8:00 am. Nephrology. Dr. Venkat.
No change in immunosuppression drugs.
Aug-31-2006, Thu.
Transplant 5th anniversary
Sep-03-2006, Sun, email:
Dear Dr. Adawi,
I am sorry to bother you but I know how much you care and maybe you can enlighten me.
The whistling in my lungs gone. Still coughing a little but it's much better.
I still have occasional back pain but it is down to 1 in a scale of 10, and no fever.
On Aug-30 I saw Dr. Venkat from transplant and he thinks that my anti-rejection drugs shouldn't be reduced.
On the same day I saw Dr. Tejwani from oncology but got very little info.
She wants me to repeat the CT and pet scan in October.
I have a few questions.
I had X-ray in the ER on Aug-14 and no fluid was found. But the CT on Aug-16 showed fluid.
What could have happened in 2 days?
What was the increase in nodules (number and size) from my CT on Feb-10?
What was the size of the most common and the biggest nodules?
How many samples were taken during the bronchoscopy and how many of them where positive with Spindle cells?
Were they spread on both lungs?
Were there other findings?
We continue our research but still not sure how the Spindle cell is classified.
Is it small cells or not small or giant cells?
Is it sarcoma?
We also check what options we have with alternative medicine. Of course I'll not take any natural remedy w/o consulting transplant.
Any information will be greatly appreciated.
Thanks,
Gil
Sep-03-2006, reply:
To: Gil
Subject: Hi there.
It's never a bother Gil, I'm glad to be of help.
I'm sorry your appointment with oncology wasn't more helpful. I read her note in the computer and my impression is that she is waiting to present the case at lung tumor board (a conference we have that all the cancer doctors attend) for a consensus on treatment (as your particular case is very rare).
I think the issue with the fluid not being visualized on the xray but then seen on ct scan has to do with how much more sensitive at picking up these things ct is. It's just a better imaging modality. Has higher resolution and so forth.
Here is the report of your most recent CT scan comparing the nodules.
Comparison is made to the initial CT, August 25, 2005. There are many more nodules and those that were present have all increased in size.
These nodules are poorly defined with spiculated margins . The largest elongated horizontal somewhat tubular shaped mass in the right upper lobe is difficult to measure for comparative purposes however the diameter on the current study of the largest portion of this lesion measures approximately 21.5 millimeters compared to previous measurement of 16.5.
Regarding the bronchoscopy, the biopsy specimen was taken from this largest lesion that is mentioned above. It is difficult with bronchoscopy to obtain samples from smaller nodules (because you can't directly visualize your location), so not all areas were sampled.
Spindle cell is a type of large cell lung cancer, and is ALSO classified as a sarcoma. That's probably why you're finding it under both subheadings.
I'm happy to help in any way I can, so don't hesitate, please. I will keep an eye out for the lung tumor board collaborative conference note, and see what their recommendations are.
Hope this helps answer some of your questions!
Rana
Sep-13-2006, Wed.
12:30 pm. Dr. Tejwani
She gives us a little more info. I don't know how many cases of spindle cell nsclc (non small cells lung cancer) she encountered in 25 years.
I hate to be "an interesting case". I don't want a disease named after me.
She prescribed Tarceva 150 mg /day. It's a new pill that is taken every day at home.
This stuff costs $3000 for 30-day supply, but thanks to Medicare drug plan I pay just $60.
She thinks that the progress is slow.
I'll see her in a month and in December I'll have another pet scan and ct.
Sep-22-2006, Fri.
During the week all hell broke loose. Diarrhea. Rash with acne on neck, face and head. Swollen lips. Mouth sores. Red areas on my face. Substantial nose bleeding. Can't shave. Can't brush my teeth. Unable to eat.
10:00pm. Dr. Tejwani. Tarceva on hold. Changed dose to 100 mg.
Clindamycin ointment for the acne. Magic mouthwash.
Sep-23-2006, Sat.
Almost no change. My face and neck are red and covered with a carpet of acne. 37.3
A little swelling on one side of my mouth. A few cracks in my lips.
I force myself to brush my teeth. With electric toothbrush it is easier to avoid touching the painful sores. Shaving - no way Jose.
Boost high-protein for breakfast. For lunch my wife prepares chicken/veggie soup and blends the stuff with a hand mixer to make it baby food...
I drink it with a straw to avoid irritating my mouth sores. That's an old trick that also helps drinking the CT stuff.
Sep-28-2006, Thu.
I don't give up and resume Tarceva 100 mg. every other day.
This time the symptoms are weaker but still bothering and I have chills.
Oct-17-2006, Tue
There are a few lumps on my skin and I go for biopsy.
Dr. Robert Elkus. Biopsy: right thigh, neck, skull. Result: all 3 are cancerous. Sarcoma, melanoma.
Oct-27-2006, Fri.
The last CT showed a new problem: fluid around the heart. Cardiology, Dr. McCord.
Echocardiogram. Not enough fluid for draining.
Nov-07-2006, Tue.
I stopped the Tarceva for a week and now it is my third (and last) attempt to resume it.
Nov-20-2006, Mon.
Another echo, less fluid.
My creatinine is 2.5, the highest in 5 years. Am I going to lose the kidney?
Nov-27-2006, Mon.
Creatinine down to 2, thanks God for that.
Dec-11-2006, Mon.
The lump in my skull is painful and I take painkillers. My oncologist suggests radiation.
Last week I had the first CT after starting Tarceva.
I have a consultation meeting with Dr. Levin from radiation.
That was the first time that someone went with me over my CT's, compared them and explained the differences.
He thinks that Tarceva is not for me. One percent of patients cannot tolerate it and I am that one.
As for the lump in my skull he says that 4 treatments will shrink it with very little side effects.
I will lose some hair just around the lump and feel like having sunburn.
I still don't have any symptom of lung cancer. No pain, no breathing difficulties, no nothing.
Since starting Tarceva my weight is down from 180 to 166 lbs. My hemoglobin is going down with every blood test and now it's below 10.
Dec-12-2006, Tue.
First radiation therapy. They take measurements for a couple of hours but the treatment is just 2 minutes. I don't feel anything.
Dec-14-2006, Thu.
I ask for a second opinion and see Dr. Chapman, head of the oncology department.
He explains everything in detail and answers my questions. We ask him to be my doctor and he agrees.
He suggests chemo with Alimta, which is easy on the body. The treatment is once every 3 weeks. Before the real stuff they give some IV med against nausea.
Dec-21-2006, Thu.
First chemo. A big room with recliners, similar to dialysis but with IV machines instead. Here the similarity ends. It seems that dialysis patients are step children compared to this nice and clean place, where crackers and some soft drinks are provided. Every station has a small flat TV. Cell phones are allowed and enough chairs are available for family members. The nurses are nice and cooperative. During the treatment they show us a video about cancer, give more info and answer our questions.
The treatment itself is no big deal. I feel okay.
At home I have to take pills for the nausea for 2 more days.
The day after I have hiccups all day long. After that a few days of diarrhea.
Now I learn that $3000 for the Tarceva was a steal, because the Alimta cost $12,000 per treatment, which Medicare pays.
Dec-22-2006, Fri.
Another echo follow-up. The doc comes to see. A little less fluid around the heart.
Dec-26-2007, Tue.
I am 66 year old. We hoped that the Tarceva would be effective and we'd tell the story to the family in past tense. Now that hope is over and it's time to update relatives and close friends.
Jan-11-2007, Thu.
2nd Chemo. Same symptoms as before but this time I lose my appetite and hardly eat.
For the first 3 days after the chemo I feel better with more energy. 2 days of constipation.
For the first week I am tired and sleep during the day. The second week is a little better.
My Hemoglobin is low and I have chills. I have hard time coughing from deep down the throat (fortunately, whatever comes out is clear) and I take Robitussin 3 times a day.
I am short of breath and use a wheelchair while going to the clinic. My wife drives me most of the time and comes with me even when I drive.
Feb-01-2007, Thu.
3rd Chemo.
Feb-02-2007, Fri.
Transplant clinic. Because of the diarrhea they discontinue my cellcept. They say that my immune system is already poor enough and will not reject the kidney.
Feb-03-2007, Sat.
Another echo. More fluid is seen.
Feb-08-2007, Thu.
Creatinine 1.5- the kidney is still strong.
Feb-13-2007, Tue.
Our daughter gives birth to a baby boy and we become grand parents. On both side of the globe we have web-cams so except of holding the baby we are virtually there...
Feb-22-2007, Thu.
4th Chemo. My weight is down to 160 lbs. I look like a Zombie.
I have no problem sitting but standing and walking are tough.
My hemoglobin is 8 and they give me 2 units of blood.
To conserve my energy we buy a shower seat. I now shower, shave, and brush my teeth while sitting.
Feb-29-2007, Wed.
Echo. Cardiology. Dr. McCord. He is worried about the fluid and wants to drain it before the weekend.
It can be done by a surgery or by a needle. He prefers the needle. This procedure is called Pericardiocentesis or pericardial tap.
To learn more goto: WebMD Pericardiocentesis
Mar-01-2007, Thu.
Hospital. Dr. Kim. He thinks that I can wait a month or so but I decide to proceed.
OR. 4 nurses work efficiently around me. IV. EKG. Local anesthesia. Needle. I don't feel anything.
Half a liter (16 floz) of fluid is drained.
I am taken to a room in H5. I feel okay. At lunch I eat something but after that I have no more appetite.
In the evening I have chest pain.
I am alone in a double room. Every 4 hours they take blood pressure, temp, and some blood.
In the evening I tell the nurse that I need darvon at 9pm. This is a narcotic pain killer that I take at home. At 10pm she says that I should take Tylenol. I insist on darvon. I have darvon with me but I wait. At 11pm she brings me darvon, but it's beyond my sleeping time and I don't fall asleep. At 12am the night shift nurse comes to introduce himself. At 2am I give up and take another darvon.
The place is noisy. My bed is near the door. Carts with squeaky wheels pass by, defying common wisdom about the squeaky wheel getting oil, staffers are talking aloud, somebody vacuums the place, whenever a baby is born a nursery rhyme plays on the PA system, and as soon as I fall asleep the nurse comes to take my BP...
At 4am another patient is brought in and there's a lot of noise for another hour.
I tell the nurse about my chest pain and get oxygen and a nitroglycerin pill. Am I going to explode?
Mar-02-2007, Fri.
Echo. At first they say that there is more fluid, and then they say there is less. They move me to a private room. They say that I may go home. Chest pain is awful and I spend the time in bed.
At 5pm they discharge me and we go home.
Mar-04-2007, Sun.
The pain moves to the heart. I can hardly walk and my wife pulls me around home sitting in an office chair.
Mar-06-2007, Tue.
Echo. X-Ray. Cardiology.
During the X-ray I have to lie on my left and right sides. It is almost impossible because of the pain and shortness of breath. We rent a wheelchair for Home.
The cardiologist thinks that it's inflammation and prescribes 50 mg prednisone. This miracle drug kills the pain in two days, resumes energy and appetite, and in general makes me as good as new (relatively speaking). No need for the wheelchair.
Mar-08-2007, Thu.
Dr. Chapman. On Mar 5th I had CT. There is more fluid and growing nodules in the right lung. Almost no change in the left one.
Now what? Is that the end of the road? Not at all! There are other meds and he prescribes Gemzar. This one is administered twice during a 3-week period.
Mar-09-2007, Fri.
My cardiologist tells me to taper down the prednisone. 40-30-20 mg until Mar-23.
As I reduce the prednisone some previous symptoms, such as shortness of breath, coughing, and nose bleeding, return. Appetite stays.
Mar-15-2007, Thu.
5th Chemo, day 1.
Mar-22-2007, Thu.
5th Chemo, day 8.
It is hard to find a vein and I need an expert to do it. Almost always I need two pokes before it is done. They suggest installing a med-a-port and schedule it to Apr-3.
Mar-23-2007, Fri.
Cardiology. Dr. McCord. He thinks that the shortness of breath is linked to the lungs and suggest drainage as the next step. The prednisone is further tapered to 10, then 5 mg.
Mar-29-2007, Thu.
Yesterday night I had fever 38.3 C (101 F). Now it is 9pm and it is 38.6 C (101.5 F). Time to go to ER. We are there in 20 minutes and my temp is just 37.6 (99.7). Maybe my thermometer is faulty?
They give me Antibiotic IV and want to send me to the hospital. Meanwhile my temp rises above 101, so there's no problem with my thermometer. Later they decide that I can go home and take ampicillin pills.
Mar-31-2007, Sat.
During the night I feel shortness of breath and the fever persists. ER one more time.
My wife takes me with our wheelchair to the front door. The car parks a few feet away. I make it to the car and feel like my lungs are going to explode. It takes a few minutes before I catch my breath.
9am, ER. They give me Cipro IV but meanwhile the fever reaches 39.5 C (103 F).
They arrange a room for me in the hospital and call an ambulance to take me there.
We get there at 5pm and I am in P2, room 44. That's a big convenient private room with a kitchen sink, refrigerator, TV, a small dinning table with 2 chairs, a recliner that can accommodate one family member for the night, and best of all - it has it's own heating/cooling control.
The high tech bed with dozens of controls has a new feature - a built in scale.
A private room has one more advantage - the door can be closed to avoid external noise.
Shortness of breath is awful. I can hardly walk one step and I use a bedside commode to save trips to the bathroom (which is only a few feet away from my bed).
I get a box of alcohol hand wipes - surely I am not the only patient here who can't make it to the bathroom...
My blood Oxygen is low and I get Oxygen night and day, but I don't feel any improvement.
Apr-01-2007, Sun.
I receive Vancomycin and Cefamycin. It's difficult to find veins in my right arm and I am full of bruises.
They increase my Prednisone back to 50 mg. (it was tapered down to 10 mg). My appetite soars, I am hungry and the hospital provides a nice variety of foods... (I can select every meal from a menu).
Apr-02-2007, Mon.
They suspect that the shortness of breath could be caused by blood clot in the lungs. This can be identified by CT with contrast, but because of the kidney transplant contrast is out of the question. In the morning they perform a procedure that I had a year ago - lungs V/Q scan. The result is that a clot is unlikely. Echo is performed immediately after to check the fluid around the heart. At 9pm they take me to X-ray; pictures are taken while I lie on my right and left sides to see how much fluid is in the lungs.
Fortunately, most procedures are performed on the same stretcher they carry me.
Apr-03-2007, Tue.
No more fever. The reason for the fever is not known, as all cultures were negative. I think it was steroid hangover but no doctor agrees with me.
Doctors from nephrology come to see me every day. My creatinine is 1.9.
9am. Interventional Radiology. A med-a-port is surgically put thru the jugular vein into my chest. It will be used for chemo therapy, get blood drawn and get transfusions. It is under the skin, so when not in use it doesn't require special care and I can shower.
Back in my room the nurse pokes the port with a special needle that will stay there until I leave. No more searching for veins in the middle of the night.
5pm. They decide to drain fluid from my right lung. First I go to ultrasound and they mark a point on my back (and in addition check my kidney). Then, in my room, they drain fluid from my right pleura, which is the thin membrane that lines the chest cavity and surrounds the lungs. Two liters are drained (that's half a gallon!). After that X-ray, still in my room, to check for bleeding or air.
To learn more goto: MedLine Pleural Effusion
Apr-04-2007, Wed.
Shortness of breath diminishes substantially. I don't need Oxygen anymore and the IV's are stopped as well.
I start to walk in my room, but after a week in bed my legs are quite tired. While walking, all of a sudden I feel uncontrolled tremor in my right knee. A physical therapist comes and suggests using a walker.
Apr-05-2007, Thu.
The chemo for today is postponed.
In the morning they decide to send me home, but as usual they don't release me until after dinner...
Apr-07-2007, Sat.
My legs are getting stronger and I can walk without the walker. The shortness of breath is better but still there. Another benefit of the fluid drainage is that now I can sleep on my right side, which is more convenient than sleeping the whole night on the back.
We rescheduled the chemo for next week.
Apr-12-2007, Thu.
6th Chemo, day 1.
This time the port is used and they connect me in no time.
Creatinine is 1.7 but the Bun is 52 and for the first time my Gfr is 29 (stage 4). The reason could be extra lasix I have been taking lately as I see fluid accumulation, probably due to the prednisone (and hair growth as well). Hemoglobin is 10.9. The prednisone is down to 25 and my oncologist wants to taper it down to zero in 3 weeks or so.
Since the biopsy in October the lump in my neck has been growing, so my oncologist suggests a plastic surgery. We have to make an appointment for that and also appointment for CT before next visit.
Apr-19-2007, Thu.
6th Chemo, day 8.
Some good news: Hemoglobin is up to 11.2.
During the week I tried to go down with the prednisone to 20 mg but after two days I had 37.6 C (99.7 F) fever at night so I went back to 25 mg. My appetite is down and I need more sleep.
Apr-20-2007, Fri.
Plastic surgery, Dr. Elkus. He checks the lump on my neck, calls my oncologist, and the surgery is scheduled to Wednesday.
Apr-24-2007, Tue.
Pre-op. Questionnaire. Same questions about my health- past and present, list of my meds. (I always carry the list in my pocket). The surgery is tomorrow 11am.
Now we wait for the nurse. An hour passes by. The cooling is on and I feel the cold air penetrates into my bones. BP, once more list of meds and which one I should take before the operation, bring all your meds with you, don't eat after midnight. We are out and I am afraid that I caught a bad cold.
Apr-25-2007, Wed.
Early in the morning I am cold and have chills. I stay in bed until 9am. I am shaking.
We get into the car and I set the heating on max. No avail. I am burning and still have chills. We get to the reception in a wheelchair and the receptionist brings me a warm blanket. The doc is behind schedule. We wait half an hour in the waiting room. We are called to the pre-op room. It is warmer in there. Take all your cloth off. The nurse covers the bed with a warm blanket and brings 3 more to cover me. It's going to be a long wait she says, but now that I lie in bed and warm the chills stop and I don't care.
My temp is 100F. The nurse repeats the same questions I was asked yesterday, she copies my med list and checks the meds I brought from home. Do you wear dentures, contact lenses, hearing aid, jewlry? no, no, no, and no.
My blood oxygen is low and the nurse gives me oxygen. She doesn't want to use my med-a-port and sticks an IV in my arm.
At 1:30pm Dr. Elkus comes. What kind of music do you like? I am for ballroom music but he has got Big Bands on his player.
They give me something for relaxation and take me to the OR. I am so relaxed that I don't remember anything about the surgery, not even the music.
At 3pm I am in post-op, my wife comes and helps me dress, and after drinking apple juice we are out. I feel much better, but at home I stay in bed for the rest of the day.
Gil could not complete the rest of this story. The following was written from his wife Penny's records.
Apr-27-2007, Fri.
12:30 pm - CAT scan of the lungs.
Gil is worried that his kidney function is decreasing. He has less urine. We call nephrology to make an appointment.
Apr-28-2007, Sat.
Gil has a fever of 39.5C (103F) and severe shortness of breath. At 10:30am we drive to the ER. I take Gil to the car in a wheelchair. He can hardly stand, and he gets into the car with great difficulty.
At the ER, they take Gil to a private room. They give him oxygen and take him for an x-ray. They suspect that he has pneumonia and give him IV antibiotics.
They take blood samples frequently, which show that his blood oxygen level is very low. They are worried that the low oxygen content in his blood may affect his brain, but, thankfully, this is not the case.
They decide to hospitalize Gil in the intensive care unit, but we have to wait until a bed is available. We stay in the ER all day, and it is freezing cold in the room. Gil is not allowed to eat or drink because they are not sure what kind of treatment or procedure he will need. At 8:00pm, an ambulance arrives and takes Gil to the main hospital's ER to wait for an ICU room to become available. At least at this ER we are not freezing.
Apr-29-2007, Sun.
At 2:30am, Gil is transferred to the Intensive Care Unit - Medical Critical Care Unit. He is connected to oxygen and to a monitor which shows his pulse, his blood pressure and the oxygen level in his blood. Even with the oxygen he is getting, Gil still has difficulty breathing.
I stay with Gil during the night, or what is left of it. I sit in a chair beside him. The rooms in this unit have no armchairs or other comfortable accommodations for family members.
Sometime during the morning, Gil gets an x-ray and an echocardiogram. They bring the equipment to the room and perform the procedures there. Later, doctors come and tell us that the echo shows an accumulation of fluids around the heart, causing pressure on it, and that given the low oxygen level in Gil's blood, there is a high risk that his heart will collapse. They suggest urgent surgery to drain the fluids.
We decide to wait until Monday, when the senior cardiologists are in the ICU, so they can decide.
As with yesterday's stay in the ER, Gil again does not eat or drink during the day because the doctors are considering surgery.
Apr-30-2007, Mon.
Gil is feeling a little bit better. A cardiologist and his team (Dr. Stephen Smith and some interns) arrive and tell us that it is very important to perform surgery to drain the fluids around Gil's heart. Arrangements are made for tomorrow at 11:00am. The surgery will be performed by Dr. Silverman.
Gil is very worried about his kidney function. He cannot pass urine, and a doctor from urology eventually comes to insert a Foley catheter.
May-01-2007, Tue.
The nephrologists come in the morning to check on Gil. His creatinine is up to 2.6. His feet are very swollen, but they say that he does not have enough fluid in his system and that he needs more. Well, he has not had much to drink since Saturday. We explain that he will soon be going into surgery and that we will ask the doctors there to give him more IV fluids.
The surgery that was supposed to happen at 11:00am is postponed until 4:00pm. Gil hardly has any urine. I ask the nurse to have a doctor give Gil IV fluids because his kidney is in danger. Nothing happens, and at last at 4:00pm they take Gil to surgery. The surgery is over quickly. They drain some fluids from his heart and left lung, and leave tubes connected so they can continue draining fluids. We find it odd that they drained fluid from his left lung and not his right lung, seeing as his right lung is the one with more tumors and fluids.
After the surgery, Gil is in a lot of pain, and the morphine they give him does not help.
At 12:30am, they give him a shot of a different medicine - hydromorphone - and this does the trick.
May-02-2007, Wed.
We see no improvement in Gil's condition after the surgery. He still cannot breathe without the oxygen connection and he seems very sick. The tubes are bothersome and painful, especially the one in his heart.
The head of the Critical Care Unit is Dr. Bruno Digiovine. He arrives with his team and tells us that Gil's condition post-surgery is actually worse, not better. He says that in addition to his breathing problem, his kidney is in danger. Well, we've been worried about that all along! Gil has a bad feeling that he is not getting out of the hospital this time.
To make matters worse, Gil has contagious bacteria in his stool. He has diarrhea, and this makes his life even more difficult. He cannot get out of bed to use the bathroom or even use a commode - his blood pressure is too low, he needs oxygen, and he has the draining tubes in his heart and lung.
Now, everyone who enters into the room must wear a disposable gown (we were told that this bacteria is something people catch in hospitals).
Today, Gil is finally getting IV fluids, and urine is starting to come out.
Every day, the nephrologists from the nephrology clinic come to check on Gil. Dr. Karthikeyan, the nephrologist, comes to visit Gil. She says that they examined a urine sample, and it showed some temporary damage to the kidney, but not kidney failure. Since there is no rejection, there is no need to change the anti-rejection drugs that Gil is taking. Fluids may restore the kidney's function, we are told. Well, we can only hope.
Later, two doctors who work with Dr. Silverman, the cardiologist who performed the surgery, come to drain fluids from the right lung. This might help alleviate the breathing problems and the low blood pressure.
They perform the procedure in the same room and leave a tube attached to continue draining fluids for a few more days. Now Gil has three draining tubes connected. It is incredibly uncomfortable, and he can hardly move. He cannot roll onto his sides, only lie on his back.
This evening, Gil looks better, and I decide to go home to have a good night's sleep in bed.
I leave around 10:00pm and go to sleep around midnight.
May-03-2007, Thu.
I wake up at 3:00 am to the ringing of my cell phone. It is the nurse responsible for Gil. She tells me that his blood pressure has dropped to dangerously low (both systolic and diastolic). Gil asks to talk to me. He says that he just wants me to know that he is not in pain and that he loves me. I tell him to hold on and that I'm coming. When I get to the hospital, Gil is being treated with some IV medication to help his blood pressure go up, and to our relief it works.
During the day, Gil's blood pressure improves, but the blood tests now show that his blood sugar is high, and he needs insulin shots. If that's not enough, the tests also show an enzyme indicative of some heart failure. Gil's dialysis shunt is barely audible, meaning that it will be unusable for dialysis if necessary. And on top of all this, it seems that his kidney has stopped working.
We realize that the blood pressure drop had some awful consequences. His heart could not pump blood effectively to his body - there was no pressure to push it - and that caused damage to his heart and his kidney. The doctors do not know what caused the problem (or so they tell us), but the aftermath is devastating.
But the nephrologist, Dr. Karthikeyan, refuses to give up. She says that because the kidney was not rejected, it may still recover in a few days, even if Gil may need to undergo a few sessions of dialysis to cleanse his body.
Gil's blood pressure is steady, but Gil is very realistic and very logical, and he says that even if his blood pressure stabilizes and his kidney begins working again (or if he does dialysis instead), we still cannot forget that he has cancer, so there is no way out of this. But I cannot give up, and I cannot let him give up.
I spend the night with Gil.
May-04-2007, Fri.
Gil is feeling much better today. The tube draining fluids from his heart is removed, and Gil is relieved. But the doctors cannot explain why his breathing has not improved after removing the fluids. They are worried that he may have a blood clot in his lungs, and they test him for blood clots. But there is no indication of a blood clot. We are relieved yet simultaneously worried because there is no explanation for his breathing problem. The doctors add heparin shots to his medication to prevent blood clots. Heparin is a blood thinner. Today, Gil gets IV Lasix, and the urine starts coming. We both feel better and hopeful.
May-05-2007, Sat.
The monitor shows that Gil's blood pressure, pulse, and blood oxygen level are good, and we feel more optimistic.
In the morning, Gil receives large doses of IV Lasix, and it improves the amount of urine being produced. His feet and hands are very swollen, though. Meanwhile his creatinine levels are going up (3.6).
Today, the ICU doctors decide that Gil does not need to stay in intensive care any longer, and in the evening they transfer him to the Nephrology unit, H-214, a private room. They don't have an IV pump available, so for the time being Gil is not receiving IV Lasix. We are disappointed and worried, but there is nothing we can do.
Gil has not eaten for the past few days and has only had fluids. He does not want to have a bowel movement or diarrhea while he is unable to get up from bed to use the bathroom or a commode. He was taking antibiotics for the bacteria, and as of Thursday the diarrhea has stopped.
I spend the night with Gil. At least this room has two chairs, so I can raise my legs, swollen from days of sitting in the ICU. It is very cold in the room, and I think it may be cold in the entire unit because even the nurse that comes into our room has a blanket on his shoulders.
May-06-2007, Sun.
At 4:00am (Sunday morning) the night nurse comes to check Gil's blood pressure, pulse and blood oxygen level. Here, there is no monitor like there was in the ICU, so the nurse checks Gil's vitals every few hours. His pulse is very high (149) and the nurse hurries out of the room to call a doctor. Within a few minutes, a few doctors enter the room and immediately decide to transfer Gil to the Cardiac Intensive Care Unit.
Gil gets IV medication to treat his high and irregular heart rate, but it is still high during the day, and the doctors suggest electrical cardioversion treatment (electrical shock). We have no knowledge of this procedure, and we don't know what to do, but the doctor that intends to perform it explains that a very low voltage is used for the electrical shock, and there is little risk. They generally start with a very low voltage. If the procedure fails, they increase the voltage slightly and try again, and if there is still no effect they increase it and try one last time. He explains that it is a very simple procedure, and very often only one shock is needed to restore a heart rate to normal.
In the evening, we decide to give electrical cardioversion a try. Gil is sedated, and I wait in the waiting room. I am very scared and worried, but after a few minutes the doctor comes to the waiting room to tell me that they have finished and everything is okay. They gave him only one shock, and his heart rate went down to normal (87).
May-07-2007, Mon.
The doctors in the ICU decide that Gil should undergo dialysis. His blood test results show that he needs it. There is a pulse in his shunt, and even though it is much fainter than it used to be, it is sufficient for dialysis. We are very worried about the effect dialysis might have on Gil's heart, but the doctors hope that the heart medication, along with Gil's currently steady heart rate and blood pressure, will enable Gil to tolerate dialysis without any problems.
In the afternoon, a nurse brings a dialysis machine to the room, and we hope for the best. But an hour after starting dialysis, Gil's pulse jumps from 87-90 to 187.
Gil is very pale, and the monitor indicates that the oxygen level in his blood is low. The nurse immediately stops the dialysis, disconnects Gil from the machine, and gives him IV fluids. He recovers, but his heart rate remains high, and he is scheduled for another electrical cardioversion in the evening to lower his heart rate back to normal.
Everything goes well, exactly as it did yesterday. In addition to the cardioversion, Gil also continues to get IV medication to stabilize his heart rate.
At midnight, the night nurse tells us that Gil will be transferred back to the MCC (Medical Critical Care) unit because he is in under the care of their doctors. Gil has been getting heparin shots as of last Thursday to prevent blood clots and protect his heart. Heparin is a blood thinner, and tonight we notice that Gil is bleeding heavily on his arm from where the dialysis needles were inserted.
May-08-2007, Tue.
At 2:00am, Gil is transferred to the MCC unit. He has lost a lot of blood today, and they decide to transfuse two units of blood. His hemoglobin has gone down to 7.1, but after the blood transfusion it goes back up to 9.
In the evening, the doctors decide to continue with high doses of IV Lasix to try to push the kidney to work and generate more fluids. Gil has had little urine since yesterday and we hope that the Lasix will help. Gil's feet are so swollen and heavy, and he can hardly move in bed. He can only lie on his back; he cannot roll onto his sides because he still has tubes draining fluids from his lungs. There are pillows under his feet and under his swollen arms. His entire body aches. Gil thinks the end is coming and that he is not leaving the hospital alive. I'm so scared, and I try to be optimistic, but it is so difficult. Gil says that with all the problems he has now--a weak heart, kidney dysfunction, and cancer--there is not much hope.
It is a long night, and I sit and watch the Foley catheter, hoping to see the Lasix working. Urine is slowly coming out. There are approximately 100 ccs of urine per hour. It definitely makes you hopeful. You have to keep hoping. I'm not ready to give up. I hope that the Lasix alone will be enough to make the kidney recover, and that there will be no need for dialysis.
May-09-2007, Wed.
Today Gil is feeling better, and he says that he feels more optimistic and that things don't seem as bad as they did yesterday.
In the morning, Dr. Digiovine and his team come by. He says that Gil has received an entire cycle of heart medication, and now that his heart rate and blood pressure are stable, there should be no problem with dialysis.
We are worried and think that maybe Gil should continue with the IV Lasix instead to try to push the kidney to function, particularly given the good results we saw during the night, but the doctor ultimately gets to decide what treatment is most appropriate.
The dialysis starts around 2:00pm, and it ends without a hitch. But 15 minutes after Gil is disconnected from the machine, his heart rate spikes again. Gil immediately gets IV fluids and medication to stabilize his heart rate and the doctor suggests another electrical cardioversion, but Gil and I decide to wait because this time his pulse is not as high as in previous times. The monitor indicates that it is fluctuating between 115 and 128. I sit with Gil all night and watching the monitor hoping for a change.
May-10-2007, Thu.
In the morning there is still no change, but the doctor says that he does not think there is any need for cardioversion because Gil's heart rate is not that high (115-128). He hopes that the IV medication alone will lower his heart rate. He adds that we should know that electrical shock has its own risks.
Around 12:15pm, Gil's heart rate goes down to 70 and it is normal.
This evening, I feel the need to go home and lie in a bed. I cannot spend another night in a chair. I am so tired, and I need a few hours of sleep.
I leave around 10:00 pm and drive home.
May-11-2007, Fri.
When I arrive this morning, Gil looks very sick. He is in very bad shape, and I feel so guilty that I left him last night, but I was so exhausted and I needed sleep.
Gil says that he did not sleep all night. He had nothing to drink, and his mouth was very dry. I ask him why he did not call the nurse, and his answer is, "I don't know." He is desperate and he is suffering. He is very thin, but his feet are very swollen and heavy. He lies on his back in bed, unable to change positions, and the pain in his back is hard to bear. He wants to end this misery. He asks for painkillers, and when he gets some he calms down, but the painkillers leave his mouth unbearably dry. He constantly needs to wet his lips, but he cannot do it himself, so I sit close to him and give him sips of juice.
Later during the day, Dr. Karthikeyan, the nephrologist, comes to visit Gil. He tells her that he is very tired and does not want any more dialysis. He does not want to prolong the suffering. She understands, but still suggests a slower dialysis (approximately 8 hours) which may be easier on the heart. This dialysis cannot be done through a shunt, however, and the connection is through an artery in the groin. It is difficult, and there is a high risk of infection. In Gil's case, the risk is particularly high because of his weak immune system and recent diarrhea. But after a while, Gil says maybe. He does not know what to do. He wants so much to live, but he also does not want to prolong his suffering. I understand all too well, but I don't want to lose him, and I want him to live.
I spend the night with Gil, and he has a quiet, restful night. He gets painkillers, and I wet his lips by giving him sips of juice with a teaspoon.
May-12-2007, Sat.
Another day with no change, and to top it off the bacterial diarrhea comes back at night.
I stay the night with Gil, and it is a difficult night because of the diarrhea, which is adding to his discomfort and to the aches and pains that plague him.
May-13-2007, Sun.
Gil decides that he does not want to continue suffering. We discuss coming home. I know how much he is suffering, but I don't want him to leave us. I suggest that he try one more dialysis or a slow dialysis, but he explains that there is no use. We cannot ignore the fact that his heart is weak, and even if we could overcome that, he still has cancer. Even if dialysis is successful, he will still be in bed, on his back, suffering from aches and pains. We have to accept the fact that there is no way out, so why prolong the suffering? But at the same time, he says that he wants to live so much, and he has so much to live for. He adds that his mind is sound and knowledgeable, but his body has betrayed him. He says that he loves me so much and that he already misses me. I cry a lot, and I think that I am the one who will miss him when he is gone. He says that he feels he is betraying me by leaving me, and I answer that he is not betraying me because he does not want to leave. I tell him that both of us are being betrayed because it is happening to us. I don't think I have ever cried so much.
During the day, Gil feels better and seems healthier. I buy him a bottle of coke and it revives him. I still have hope.
The day passes relatively peacefully. But suddenly, at around 8:30pm, Gil's blood pressure drops and his heart beats like crazy. It is irregular and jumping between 120 and 155. The doctor keeps repeating that she is very worried about his low blood pressure. She cannot give him IV medication for his heart as long as his blood pressure is low because the heart medication lowers blood pressure. I am trembling and afraid that maybe the end is coming. I sit watching the monitor, trying with my eyes and heart to change the numbers. The doctor asks Gil if he wants to have electrical shock treatment to stabilize his heart rate, but Gil refuses. The doctor goes in and out of the room, saying again and again how worried she is that Gil's blood pressure is so low. She gives him IV fluids because he may be dehydrated, and this might be causing his low blood pressure. After a while - I'm not sure how much time has passed since all this started - his blood pressure goes up. Now it will be possible to give him the heart medication. But before getting the heart medication, I look at the monitor and I can't believe it - his heart rate is back down to normal, 87-88. This is unbelievable and a huge relief. The nurse is very excited and calls the doctor.
I stay with Gil all night. Gil feels an awful dryness in his mouth, and I give him teaspoons of juice and small ice cubes all night long.
May-14-2007, Mon.
Gil will not change his mind about not having dialysis, and the doctor notifies us that Gil is going to be transferred from ICU to Oncology (P-2 unit). There is nothing more to do in the ICU now that he has decided not to have dialysis. Gil is glad to move to oncology. The rooms there are warm and nice, and there is a sofa chair for family members. He feels bad that I'm spending the nights sitting in a chair. My feet are swollen and painful, but I cannot leave him and go home at night.
In the evening, we are told that there are no available rooms in Oncology, and after midnight, Gil is transferred to Internal Medicine (B-142). The unit is on the first floor, and Gil gets a nice room. This room has a sofa bed, and Gil feels relieved. Even in these difficult times, he is thinking of me. The nurses are warm and welcoming.
May-15-2007, Tue.
Today we are told that Gil will not be able to stay in the hospital now that he has decided not to have dialysis. I wonder why he was transferred to another unit if he has to leave the hospital. In the afternoon, we have a visit from Virginia, a nurse from Palliative Care Service. She tells us about Palliative Care and notes that it is fully covered by our health insurance. They bring us all the equipment needed to take care of a loved one at home. They supply medication, and they send nurses to visit and check on patients. But she also lets me know that in Palliative Care Service I'm practically on my own. The focus of Palliative Care Service is reducing pain and suffering while promoting comfort and quality of life. She says that Hospice provides more support for the sick person and his/her family. I ask Virginia for a written list of what is provided by palliative care and hospice care, so I can compare the two and decide which one is right for us.
Gil gets a continuous morphine IV drip, but he is suffering so much from the dryness in his mouth that he asks the doctor to stop the continuous drip and let him decide when to use morphine. The doctor agrees. Gil is trying to use it as little as possible, but the discomfort and the pain are worse without the morphine.
This evening, Gil feels very restless. I ask the nurse to tell the doctor about this, and he prescribes Zanax for the anxiety. We both go to sleep.
May-16-2007, Wed.
We wake up in the early hours of Wednesday morning (at 4:00am or 5:00am). Gil is a little bit confused and disoriented. I'm sure that this is a side-effect of the Zanax.
Later, I ask the nurse to tell the doctor that Gil needs a different drug for the anxiety.
In the morning, Dr. Hobbs, the staff doctor, visits us and tells Gil that his potassium is elevated, and that he needs dialysis. Gil answers that he will not do dialysis. Dr. Hobbs then suggests giving Gil Kayexalate. Kayexalate is a liquid that removes high levels of potassium from the body. It also causes diarrhea, and Gil says no thanks. He already has diarrhea and he is sick and tired of it. I ask him to try Kayexalate because high potassium levels can stop his heart, but Gil has already made up his mind. I respect that, but I want him to live so much. I know that he wants it too, but it is not going to happen this time. I hoped and prayed, but my prayers will not be answered. Gil is suffering so much. He has back pain, and he cannot roll onto his sides. He still has a tube draining fluids from his right lung, and the diarrhea only adds to the suffering.. It breaks my heart to see how much he is suffering.
Dr. Hobbs sends us a nurse from the hospice because now that Gil has made up his mind not to do dialysis, they cannot keep him as a patient. I talk to the nurse and sign forms for hospice care, and now Gil is considered a hospice inpatient, and he can stay in the hospital. Now the hospice is in charge, and Gil is in the care of the hospice doctor.
Over the past few days, Gil has asked me to make some phone calls for him. He says goodbye to family, friends and colleagues. Gil calls our CPA to say goodbye and thank him for his help over the years, and he asks him to give me advice whenever I need it. Even in this difficult situation, he is thinking of me.
Dr. Karthikeyan, the nephrologist, comes every day. She mentions slow dialysis yet again, but Gil explains that he has already made up his mind. She respects his wishes and even agrees with him, but she is sad. She has known him for a long time.
A nurse comes and gives Gil a shot of Ativan, 1 mg, to ease his anxiety, and Gil feels calm and even sleeps for few hours. I sit beside him. The chaplain of the hospital comes to visit and we have a long talk.
It is already night when Gil wakes up, and he seems relaxed and happy. He says that he is feeling much better. He is sure that his health has significantly improved, and he wants to have a blood test to prove it. And if there is any improvement, he wants to do dialysis. It is already 10:00pm at this point. Some friends of ours come to visit and Gil is very happy to see them. He has developed an appetite, and he eats Jell-O pudding, drinks some instant soup and even drinks a cup of tea before asking what else he can get. I'm afraid that he will throw up and suggest waiting for a while. Gil says again and again how good he feels. He insists on having a blood test done immediately. I talk to the doctor and she sends a nurse to draw blood. Gil is so excited. He is sure that a huge improvement has happened. We talk and laugh, and Gil says that if he had a laptop here he would update his website with the last few weeks in the hospital.
Gil is so happy that I wish this were a reality, but unfortunately it is not. This miracle is not happening to us.
Our friends leave at about 1:00am. Gil is still full of energy, but I suggest that we go to sleep because in a few hours the nurse will come to check his vitals. We should have a couple of hours of sleep before then.
May-17-2007, Thu.
Gil wakes up at 3:00am, and he is very upset. He looks so sad, and he says that he knows there has been no change in his health. It was just a false hope. It breaks my heart to see the expression on his face, and I tell him that since we don't know the results of the blood test yet, we cannot tell whether or not there has been any change in his condition. But Gil does not want to see the results of the blood test. He says that there has been no change, and that it was all just an illusion and a false hope. I feel so helpless. Was this the effect of the Ativan? I don't know. It is heartbreaking, and there is nothing I can do or say.
I ask the nurse to give Gil a smaller dose of Ativan in hopes that this will help his anxiety without tipping the balance. I don't know if they change the medicine or just reduce the quantity. I'm worried and tired, and I forget to ask. Today, Gil is more subdued, and he is suffering. The diarrhea is torture, and the past few days have been worse because he has a bed sore on his lower back. He cannot roll onto his side, and he still has one tube draining fluid from his right lung. The pressure on his bed sore is very painful. Because of the diarrhea, I have to frequently push him onto his side to place the bed pan, and it is so painful. He is suffering so much.
Our son, Ron, arrives from New York around 2:00pm. He has been flying back and forth. It is the end of the school year and he had exams. Gil is very restless, and Ron is very emotional and distraught. Our friends visit again tonight, and they stay until midnight. Tonight is different from last night. Gil does not participate in the conversation. He apologizes and says that he is listening to our conversation, and we say that it is okay. Gil is restless. He wants to go home and he asks for his clothes. I tell him that we cannot do it tonight, that it is too late and we have to wait until morning to make the necessary arrangements, but I promise that we will do it tomorrow if he still wishes to go. Suddenly, it is so important for him to go home that he can barely wait until morning, and I know that we have to do it.
At midnight, our friends leave and Ron and I stay with Gil. We need to be together, all of us.
It is a difficult night for Gil. The diarrhea won't stop, and his mouth is so dry. I sit close to him and wet his lips with teaspoons of juice.
May-18-2007, Fri.
In the morning, Gil asks when we are going home. I promise him that I am making all the arrangements to leave the hospital as soon as possible. I call the hospice nurse coordinator and she says that she'll prepare the paperwork and the medicine we need. She arranges to send home the equipment Gil will need - a hospital bed, a PulmoMate compressor/nebulizer, oxygen tanks, etc. Arrangements are made for an ambulance to take Gil home at 4:00pm. Gil is in pain and he says that he wants to die. He is tired of the prolonged suffering. When he decided not to have dialysis, he said that he does not want to be in pain, and I promised him that he would not suffer, even if it meant fighting with the doctors. I thought that I had the power to make sure he is not in pain. I didn't know what I was promising. I thought that I'd be able to protect him and help him as I always have, and it breaks my heart to see what he is going through.
Today, he uses the morphine drip very frequently. He dozes most of the morning because of the morphine.
In the afternoon, the nurse comes and disconnects Gil from the IV and the morphine. She explains that he cannot go home with an IV pump, only with oxygen. I don't understand. When I looked into the hospice, I was told that the hospice does not use IV treatment, but in Gil's case, since he already has a med-a-port, there should be no problem using IV medication. I only signed up for hospice after checking every detail. I originally thought that the hospice nurse that would be waiting for us at home would connect an IV, but now I am nervous because there should be no reason to remove the needle from the med-a-port. Later, the hospice nurse/coordinator comes with the medication, and she shows me a bottle of morphine and explains how many drops to drip into Gil's mouth. I ask her about the IV morphine, and she says that this will replace it. I don't understand. I tell her that Gil cannot eat; that I only give him teaspoons of juice or crushed ice because of his dry mouth, so that every medication that can be administered through IV is easier for him. I remind her that she promised me that, because of the med-a-port, Gil would continue getting IV treatment. She says that last week Gil hardly used the IV morphine, so they decided not to continue with it. I don't understand how she can make such a decision without even consulting me or notifying me. We are going home, and they are changing things without even checking how it might affect him. I tell her that Gil was using the IV morphine drip yesterday, and that today he has used it very frequently because the pain is worse than a dry mouth. I start to cry because I feel deceived and I am afraid of the effect it will have on Gil. They promised me that his best interests were at heart, but now look at what they are doing. I tell her how I feel, and she asks me, teary-eyed, to trust her. She promises me that this morphine is stronger than the IV. I demand to taste it, and it is bitter. She says I should put the end of the drip in a bowl of sugar so that Gil will not taste the bitterness. I try it. Gil tastes the bitterness but does not complain. He just says that it is bitter and then dozes off. Well, maybe it is not so bad, but I'm worried, and when the hospice doctor comes I complain to him. He asks the nurse if she promised me that we could continue using IV medication. She says yes, but tells him what she just told me. The doctor also says that I should not worry because this morphine is stronger. He adds that even if we prefer IV, they would have to order the IV pump, and I would not get it before Monday. He tries to assure me that there is no reason to be concerned, but I am worried nevertheless, and I am afraid that the decision to take Gil home might not be the right one. But it was Gil's choice, and I have to respect it.
The ambulance arrives at 4:00pm, and Gil insists that I ride with him. I agree, of course. The driver is very gentle and very nice. There is a lot of traffic, but we eventually reach home. The bed is prepared and ready in the living room. Gil lies in bed, beyond talking, and just needs teaspoons of juice or small ice cubes. I guess that at this stage it really does not matter if he is here or in the hospital, but he wanted to come home so much, and I hoped, and still do, that coming home would have some positive effect on him and give him some quality time, but it is already too late. Still, my heart won't accept it. I don't want to let him go, but I know that there is nothing I can do about it.
A hospice nurse is already waiting for us when we arrive. She checks with Ron to make sure he has all the instructions for operating the equipment and the oxygen tanks. Then she asks to sit with me and go through all the medication so she can explain when to use which one. I know that Gil is worried when I don't sit by his bedside, so I give him a small bell to ring if he needs me, and I sit at the dinner table, only a few steps from Gil's bed, with the nurse.
While we are sitting together, Gil rings the bell a few times. His mouth is very dry, and he needs me to give him some small ice cubes. The nurse tells me I will regret giving him the bell, but of course I do not. It was my idea in the first place. His voice is very low now, and he is suffering enough. I want to be by his side all the time. We are used to going through everything together, except this time I cannot give him the strength to fight and win.
The medications are:
Morphine drops (5-10 mg as needed) for the pain - every 2 hours
Promethazine tablets 25 mg - for agitation and anxiety - ½ tablet every 6 hours
Immodium 2 mg - for diarrhea - every 6 hours
Dexmethazon tablets 4 mg - a steroid - 1 tablet a day
Metoprolol tablets 25 mg - for blood pressure - 1 tablet twice a day
Gil cannot eat, so I give him medication with a teaspoon of vanilla pudding. It is easy to swallow and tastes good.
Our friends come in the evening to spend time with us. Gil is tired, and he tells me that he wants them to leave. He needs peace and quiet, I know, but they are so caring and concerned. I calm Gil down and promise him that they will leave soon. And they really don't stay long.
The night is difficult and painful. The morphine does not help much, and at 3am I call the on-call nurse and tell her that Gil is in pain. She tells me to increase the morphine dosage slightly and promises that a nurse will come by in the morning after consulting with the doctor.
May-19-2007, Sat.
At about 11:00am, the nurse arrives. It is the same nurse that came yesterday. There have been some changes to the medication:
A Patch of Fentanyl Transdermal 50 mcg for the pain. The patch provides a continuous dose of medication and takes about 18 hours to work. The nurse applies the patch to Gil's arm at 11:00 am and says that if it has no effect within 18 hours, I should apply another one tomorrow (Sunday) at 11:00 am. If it seems to be working, I should replace it after 72 hours (on Tuesday at 11:00 am).
Morphine drops
Haldol tablets (Haloperidol 1 mg) for anxiety (or, as it is called, "terminal restlessness") - 1 or 2 tablets every hour until Gil calms down, then reduce to 1 tablet every 6 hours. (This replaces the Promethazine tablet)
Immodium 2 mg - for diarrhea
Dexmethazon tablets 4 mg - a steroid
Metoprolol tablets 25 mg - for blood pressure
Why didn't the doctor prescribe the patch before Gil left the hospital? I feel so pained and angry, and I just hope the medication will help.
I don't remember most of this day. I'm so tired, and I feel helpless. This is the first time in our life together that I cannot help Gil. I just sit in the room with him and give him medication day and night. He swallows it with a teaspoon of vanilla pudding.
May-20-2007, Sun.
Gil is calm and sleepy in the morning. I guess that the morphine and the patch are working. I don't want to give him more morphine as long as he is sleeping and calm. I talk to the nurse, and she agrees that I should let him sleep and wait until he wakes up before giving him morphine.
Our oldest daughter arrives from the other side of the globe in the morning, around 10am. She was ill and could not take a flight until today. I am so glad to see her, and I am sorry that she won't be able to talk to Gil. It is too late, and he is too weak. Gil is sleeping, and we sit and talk.
At 3:00 pm, I leave the room for a few minutes. When I come back, Gil is gone. I lost my other half, my love, my best friend. I sit with him and put my hand inside his shirt, on his heart that no longer beats but still feels warm and alive, and put my head on his shoulder. Gil is really gone.
My Love,
We were blessed to have you in our lives
You bestowed on us your unconditional love,
Your devotion and your wisdom.
We love you and miss you.